Husband needs help

So my wife was diagnosed a couple of months ago. Prednisone is keeping her around the 47 range. Once they started tapering, the platelets fell. We are going to see the top hematologist at columbia University. I also work in the medical field and due to the things I see everyday (I am not a doctor), I am having a very hard time dealing with this. I feel anxious everyday, depressed, and having difficulty working. In not eating, and am having trouble sleeping. Is there anyone out there who can help me..? We are a young couple with a 4 year old child and I just want to know that him mommy will be around for him. Please help me. And by the way.... My wife is asymptomatic and feels and looks great.

Matt,
I have read alot about ITP and from what I understand is only a very small percentage of people die from ITP. As a matter of fact you can find that documented here on this website.

www.pdsa.org/images/stories/pdf/Coping2009.pdf

I listen to another conference held in Canada from leading specialist there and they said more people die to complication of the treatment than the actual disease. So I think most can live with a low platelet count. Please watch the chapter on spleenectomy. I would personally never go that route you've compromised your immune system in many casese for nothing.

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

Have you reviewd the section treatments -> completementary. I hear a lot of people can help their situation by changing what they eat, natural herb, detox and homeopathy.

I know it is scary. I know it is a roller coaster. But I do believe that trying to figure an underlying cause is possible. There are tons of things out there to try. You just have to keep trying and see what does and doesn't work. No one thing works for everyone, there are alot of underlying reasons for ITP.

If I have success with one of them I will be sure to post. By the way I am a single mother of a 16 month old. I have to live till my boy is at least 18. So I am pretty determined. Aren't you glad there are two of you for your son?

Keep your head up and may God bless and keep you and your family safe.

Jayne.

Matt:

You need to know that most people with ITP tend to have large, reticulated platelets that work very well. Patients can handle the lower counts better than people who have low platelets for other reasons. Very few die from ITP, especially anyone who can maintain a safe count (anything over 30k). I've been below 5k several times and dying never actually entered my mind.

People with ITP also tend have a higher number of platelet fragments called "microplatelet particles" that aid in clotting. Search it.

It can be nerve wracking for families, I know. Your wife has a lot of treatments yet to try. She is only at the beginning of the treatment line up. There may be one that will put her into remission. That is always the goal, but some people end up just being happy to be treatment-free and over 30k. That is quite acceptable in the ITP world. The fact that she is asymptomatic is great!

As frustrating as ITP is for those of us with it, I think we don't always realize how much it also worries & frightens the people closest to us. My sister is a critical care nurse & she was absolutely panicked upon hearing my platelets were at 7k (they are currently at a safe ~70k).

But, as Sandi points out, 47k is a very managable count & above ASH guidelines for treatment.

Matt: I understand why you are stressed.

I have had ITP for 45 years. During that time I finished my education, including law school, traveled to every continent, climbed many, many very tall mountains, cooked freshly caught trout over innumerable camp fires, got married, raising two great kids. I've bungie jumped, kayaked class 5 rapids, hiked around very small Pacific islands with medical care many days away, been to the Olympics, taken my wife on surprise weekends to Paris, wandered around China, and enjoyed many hundreds of bottles of great wine -- and I plan on enjoying many more.

What's my point? Life isn't over. To be blunt, very, very few people die from ITP. The fact that your wife is responding to prednisone suggests that the odds of her dying from ITP any time soon are so small that you would need many zeroes to the right of the decimal point to write them down.

Take ITP seriously. Educate yourself. Seek and insist on the best medical care. But your family life isn't over and the odds of your child being without a mother any time soon because of ITP are probably less than the odds of you being killed in a car accident. So, worry about your wife, but you also be careful driving.....

Steve said it perfectly, as usual. I would add only one thing: If you were planning, eventually, to have another child, that, too, is probably manageable once both of you, and her hematologist, have a grip on how her body handles ITP. (It may mean an extra layer of medical involvement, as in maternal-fetal specialists or high-risk ob-gyns.) Plenty of ITP ladies at this site have posted pictures of beautiful babies. As mom of an ITP teen, I know it is worrisome to go through this with your loved one. Hang in there, and know these folks are pulling for you.
Norma

I can't thank you guys enough. Like I previously mentioned, we have an appointment with the top specialist at columbia university next week. Thank you again for all your kind words, support, and reassurance. Being that I am a healthcare worker, I see all kinds of crazy diagnoses and disorders. However, when it hits close to home, it brings on a whole new meaning. The one thing that I am very surprised at, is all the negative attention surrounding a spleenectomy. From what I have read, it seems it might be a temporary fix, and that there is a high percentage of pe who's levels drop again. I know I keep repeating myself, but thank you thank you thank you! Maybe I will actually get some sleep tonight. I would also like to know people's thoughts on holistic care accompanied by traditional medicine?

The opinions of 'holistic care' vary by forum, and you'll get more positive feedback on the natural treatments forum.

I like to say 'nothing is better than homeopathy' but when I say it, it's word play. On the other hand, taking care of yourself, eating healthy foods, exercising - generally can't hurt.
Erica

Well said Steve!!

As a person with ITP I can understand what you are feeling. It is a scary thing at first but it does get easier. Try to relax. You need to be the rock for your wife and child. Many people do just fine with counts in the 40's, and 50's. I have a friend that has counts in that range. She has a family and works. She is tired alot but just deals with it.
Stay positive. You will get through this.

If you do not mind me asking, what Healthcare posisition do you work in? I also work in Healthcare. Not direct Patient care, but I have seen alot in the past 18yrs.

I am anti-Splenectomy unless ABSOLUTELY neccessary. There is not enough evidence for me that a Splenectomy is the way to go for ITP. Once it is gone there is no replacing it.

Well said Steve!!

As a person with ITP I can understand what you are feeling. It is a scary thing at first but it does get easier. Try to relax. You need to be the rock for your wife and child. Many people do just fine with counts in the 40's, and 50's. I have a friend that has counts in that range. She has a family and works. She is tired alot but just deals with it.
Stay positive. You will get through this.

If you do not mind me asking, what Healthcare posisition do you work in? I also work in Healthcare. Not direct Patient care, but I have seen alot in the past 18yrs.

I am anti-Splenectomy unless ABSOLUTELY neccessary. There is not enough evidence for me that a Splenectomy is the way to go for ITP. Once it is gone there is no replacing it.

matt,
i just wanted to comment on what you said about seeing a top specialist at columbia.
when i was diagnosed about ten years ago, i was living in rural nh. (rural in new england being much different than rural in like arkansas however). anyhow, my doctor was at this small clinic that was like a little outpost, about ten miles from the major hospital. since i was originally from boston anyway, i moved back so i could go to massachusetts general hospital, considered to be the worlds best. i felt so good going back because i just figured they would have all the answers. i even had a world renowned hematologist.
well the day i went, this is what i got......
we don't know what causes it, we don't know how to cure it. we have maybe a dozen possible treatments, we'll try one after another, hope for a response, and if not, go on to the next one.i was like, you mean trial and error? like a car mechanic who's not sure whats wrong?
now, i'm not recommending this part, i refused any kind of treatment, had several cbc's over the course of about a year, never had counts much higher than 9 or 10, and then never went back. that was in 2001 and i'm still standing, although quite asymptomatic.
anyhow, my point is, don't get your hopes up that just because your going to somewhere prestigious, you'll get any answers. i was disappointed and so maybe being somewhat on guard, you won't be.
there is certainly a learning curve with itp, but it is more of what you gather than the doc (unless he's not on the ball, but that can happen anywhere).

freckles

Freckles....I'm sorry that is what you got from Mass General. That being said, please understand this is a support site and I am in a very volatile state, and to hear you say to me "don't get your hopes up" is really appalling. I AM getting my hopes up and praying everyday, sorry if you don't agree with that approach. I'll let you know when her levels rise......thanks for your "support".

I've gotta stick up for freckles here and say we also try to give each other information and opinions as well as support. If you were pursuing a treatment that I didn't think was likely to help, like for example ionized seltzer applied to your scalp, I would maybe comment that there wasn't a lot of evidence to support that treatment. Or if I had an opinion about the approach you were taking or personal experience that I thought would be useful to share, I might share that. It isn't all fairies and wax lips.
Erica

sorry matt that i upset you, certainly that was not my intention. i can tell by your reponse you're pretty ticked off , and you maybe even held back a little.
so, i'll rephrase a little, and then i'll drop it. what i meant to say was, if you go to mass general or petticoat junction, there is only a limited number of treatments that will be offered, and there won't be some "answer". if there were an answer, we would all know it by now.
when i first was diagnosed, that was all i did was search for an answer, and no doctor ever had it.

Freckles and Erica make good points, even if it may not be what you want to hear.
In this journey, be prepared to listen to many things that you may like, especially from those who have been there. 'Support' should maintain some measure of reality, otherwise it's meaningless.
And no, I don't always like reality either....but there it is anyway.

Matt just wanted to assure you that this is a very supportive group. Everyone really cares. There is a lot of good information and support here, its an amazing place so hope you'll keep sharing your journey with us.

Sounds like you are imagining the worst possible scenario. If you can find a really good doctor he may be able to ease some of that fear, and make you feel stronger and more confident that your wife is okay. Its awesome that your wife has no symptoms, looks and feels great- thats important.

My first hemo scared the life out of me, and with all his barrage of treatments my health was deteriorating. I found another hemo who was so much better, he listened and gave me confidence that everything was fine, I actually enjoyed visiting the office. He said with ITP his first priority was to "do no harm", so he took it easy with the treatments. That relaxed attitude has been great for me and over the years I have grown to trust that I am okay.

Also want to mention, the roller coaster of ITP can really take its toll on a person. Some of us have been on this ride for many years so I hope you'll be forgiving if we've been frustrated and disappointed with treatments, lack of information, complexity of ITP, and difficult doctors. I've often thought I'm glad that I have ITP rather than my son having it. I would worry so much more if it was someone I love.

Anyway, good work getting a second opinion! I've gotten second and third opinions and always glad I did. Hope you find your answers! best of luck to you and your family-- p

I've also got to say that Freckles and Erica have a point, but it's not necessarily all that bad. No one is trying to upset you, but you do need to see things realistically.

I also saw an ITP Specialist in Pittsburgh many years ago. I had counts below 10 and had used Win-Rho and Prednisone by that point. I was tired of the ups and downs and tired of the steroids. I naively thought the Specialist would have something refreshing and new to say. I thought she could fix it. It took an entire day of traveling and waiting, 25 tubes of blood, only to be told to 'continue Prednisone when needed'. Adios.

That's when it hit me cold and hard that there was not a fix. The exact same treatments that my local hemo was using were the same ones that were available everywhere, no matter where I went.

Now that's not to say that you should not get a second opinion. It can be very useful in certain situations. It can be useful for the person who has a country bumpkin pushing splenectomy too quickly. It can be useful when there seems to be no more options offered and you suddenly find out that your doctor has no clue about TPO's. It can be useful if you try several options and nothing is getting counts over 10.

But you do need to know that there may be many ups and downs, there may be several treatments tried....it might not be an easy road no matter where you go. But that is okay. Expect it and you won't be disappointed. That is the reality of ITP. You will get through it. We've all done it and are here to talk about it. There is always the hope of a remission and most do attain that. You and your wife will be fine.

Matt - if you haven't yet, watch this video. Drew Provan is one of the top ITP Specialists in the world.


fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

I like to say 'nothing is better than homeopathy' but when I say it, it's word play.

Erica, I will have to remember that line! I love it!

.

Weirdjack, I think it works better as 'nothing is equal to homeopathy'
Erica

Okay, now I get it! ha ha I've been scratching my head over that one. Speaking of doing nothing- if I have allergies or headache or something, but don't want to take the meds, I've been known to carry a pill in my pocket and it often makes me feel better.

So recently my nephew was having anxiety from his corporate high-stress job. He saw a top neurologist from the Mayo Clinic. His advice was to get the anti-anxiety prescription filled, don't take any, just carry it with you so you always have it if you need it. Carrying the drug helped my nephew quite a lot- I had to laugh.

Agree poseymint - I remember years of having pepto bismol with me made me feel better!
Erica